I think I might have endometriosis
Endometriosis is not uncommon. Statistics from the Australian Institute of Health and Welfare found that approximately 1 in 9 women born between 1973 and 78 were diagnosed with endometriosis by the time they were 44 years old. 50% of women with infertility have endometriosis, and 80% of women with chronic pelvic pain have endometriosis. Yet the average time it takes to diagnose endometriosis in Australia is 8 years.
So, what is endometriosis?
Endometriosis is a chronic inflammatory condition where endometrial tissue, or the lining of your uterus, grows in parts of the body that it shouldn’t such as over the ovaries, the fallopian tubes, along the lining of the abdominal cavities and outside the uterus. It can even go onto the bowel. When your hormone levels change with your menstrual cycle, you can get significant pain and bleeding. This, in turn, can cause inflammation, scarring and sticking together of organs in your abdomen and pelvis which are usually separate. These are called ‘adhesions’.
The main signs and symptoms of endometriosis are painful periods, and even pain between periods; mood changes such as low mood and anxiety; and infertility. The pain can also be pelvic and lower back pain, pain on urination or when opening your bowel, and pain during intercourse. The pain tends to get worse over time and often interferes with work, school, study and your social life.
What causes endometriosis?
We aren’t 100% sure what causes endometriosis, but the most likely theory is menstrual blood going back up from the uterus into the pelvic cavity. Then cells from the uterus settle there and grow and change with hormone levels. However, like most diseases, there are multiple contributing factors. Often people with endometriosis have other family members who are also affected, so genetic factors are likely also important.
Why is it so hard to diagnose?
We suspect it takes so long to diagnose because women are “programmed” to think that periods hurt and that they should be able to cope with their pain. As mentioned, often other women in the family also have endometriosis and painful periods so this can reinforce the idea that this is “normal”. Often symptoms progress over time, so it takes a while to impact on activities and quality of life. There can also be a delay in recognising that there is a problem and going to the doctor. Please remember, it isn’t normal to have to miss school, university, work, or social functions on a regular basis due to period pain.
Even at the doctor's office, the diagnosis is not straight forward. Unfortunately, there is no simple blood test or ultrasound. The traditional way of diagnosing endometriosis is with a laparoscopy, a surgical procedure to look inside the abdomen with a camera. This is done at a hospital under anaesthetic, so it takes time to organise and can be expensive, and there are some risks associated with any surgery. Often people have been told by doctors that they could have endometriosis but that they need surgery to diagnose it. This often leads to people feeling they have to wait until they cannot manage their pain before they can get help.
There has been a major change in thinking about endometriosis in recent years.
If you and your doctor recognise the signs and symptoms of endometriosis early, you can make a “working diagnosis”. Then you can start treating and managing your pain and halting disease progression. Most importantly, it is now clear that untreated period pain leads to a cascade of increasing pain sensitivity and whole-body mental and physical effects which can significantly reduce many measures of wellbeing.
We are not saying that a laparoscopy might not be necessary at some point. Not only are they the gold standard for diagnosis, they are also very good for treating the disease, reducing pain and improving fertility. However, the best outcomes are seen when surgery is performed by specialised endometriosis gynaecologists at the appropriate time in the disease progression; repeated laparoscopies are often associated with worse impact on pain and quality of life.
Is there help for me?
There isn’t a cure for endometriosis but there is a lot of treatment available. Firstly, knowing what the cause of your pain is and understanding it goes a long way. Early treatment is helpful and having a team of professionals who understand endometriosis makes a big difference.
Over the counter pain relief therapy such as naproxen (brand name Naprogesic®) or mefenamic acid (brand name Ponstan®) and taking them regularly from before the bleeding starts for 2-4 days every month can be very useful for managing the pain associated with Endometriosis.
Hormone treatment, such as the oral contraceptive pill, is often instigated early to reduce the pain and severity of endometriosis. It does this by stopping the endometrial cells from growing and bleeding. Sometimes, we recommend a progesterone-only pill (Slinda®) or a progesterone intra-uterine device (brand name Mirena® or Kyleena®). See our other blogs for more information on these. (https://www.innerwestwomenshealth.com.au/blog/slinda-is-a-new-contraceptive-pill-now-available-in-australia https://www.innerwestwomenshealth.com.au/blog/what-is-the-kyleena)
As mentioned, laparoscopy allows gynaecologists to surgically remove endometriosis which reduces pain and often improves fertility.
Some women get gut symptoms like irritable bowel syndrome or food intolerances, and a dietitian can be very useful in managing these symptoms.
Anxiety and depression are common; a psychologist, particularly one who is trained in pain management, can be invaluable.
A pelvic-floor physiotherapist can be extremely helpful for bladder issues or painful intercourse.
Early referral to a fertility specialist may be required.
Our understanding of endometriosis over the past few years has improved a lot. Our main message to women is that an earlier “working diagnosis” and subsequent management improves outcomes. There are a lot of very successful treatment options available.
Please if you are suffering from pelvic pain, or if you have concerns about your menstrual cycle, talk to your doctor.
References
1. The Australian Institute of Health and Welfare. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-prevalence-and-hospitalisations/summary
2. The Royal Australian and New Zealand College of Obstetrics and Gynaecology.
3. Jean Hailes for Women’s Health. https://www.jeanhailes.org.au/health-a-z/endometriosis/symptoms-causes#symptoms
